Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services

Abstract

Abstract Background Neurodivergent children and young people, including those with autism, attention-deficit/hyperactivity disorder and intellectual disability, experience higher rates of mental health difficulties than their neurotypical peers. Despite this increased need, many families encounter barriers when accessing child and adolescent mental health services (CAMHS). These barriers may occur across the service pathway, including referral, triage, assessment, treatment, and discharge. Patient and Public Involvement and Engagement, and professional contributions are essential to ensuring that CAMHS and research reflect the needs and priorities of those who use them. This paper describes a programme of PPIE and professional contribution activities undertaken to co-develop practical guidance for mental health professionals supporting neurodivergent children and young people. Methods We – a partnership between a PhD researcher, a parent with lived experience, a young person with lived experience and two PhD supervisors undertook a programme of PPIE activities, using a co-designed ‘Co-production, Accessibility, Participation and Engagement’ approach, over 12 months (December 2024 to November 2025). NW is a doctoral student, and HTr is a PPIE parent and lived experience partner. Together, we facilitated co-production activities with PPIE members, discussions at parent carer conferences, and with professional contributors to support inclusive participation and prioritise ideas. Parents, carers, neurodivergent children and young people, and professionals from health, education, and social care participated in workshops, co-production activities, and discussions exploring experiences of accessing CAMHS and identifying opportunities for service improvement. Insights shared during these activities informed the co-development of practical guidance for mental health professionals. Results A total of 60 PPIE and professional contributors took part in co-production activities. Contributors highlighted barriers including communication challenges, misunderstandings of neurodevelopmental differences vs. mental health conditions, fragmented services and limited clinician training in neurodiversity-affirming approaches. These insights informed the development of an open-access guidance resource outlining practical recommendations to support more inclusive communication, service approaches, family participation, and ongoing evaluation of service accessibility. Conclusions Collaborative involvement with lived-experience contributors enabled the development of practical guidance to improve accessibility and inclusivity within child and adolescent mental health pathways for neurodivergent children and young people. This work demonstrates how structured PPIE and professional contribution approaches can support the development of resources grounded in lived experience and contribute to ongoing discussions about inclusive child and adolescent mental health service design.